Joined: 02 Apr 2007
|Posted: Tue Apr 03, 2007 9:31 pm Post subject: Greetings from downunder!
| Hi All,
I thought I'd get a mesage up before Easter
My Name is Sherran, but I like Shez.
We have a 27 year old son Lee, who has just been diagnosed with MWS.
We are now on mission to discover what we can about MWS!
For 27 years we were under the impression that Lee had Smith Lemli Opitz Syndrome - Only to discover in the past two weeks after revisiting his geneticsist, that this was infact, not the case . We put Lee through tests, which he tolerated and came through well, the tests discoverd he had MWS.
Many things I have found on sites (your stories) indicates that Lee has some of the same symptoms.
We are fortunate that he hasn't shown signs of epelepsy.
We will be seeing Professsor Bankier in Melbourne next month to discover more about MWS, and see what she has to offer us??
I hope to get Lee's story written up for you, so as you too can see our journey coping with a child with an intellectual disability.
I look forward to sharing with you, stories, ideas and concerns!
Lee is living in supported accommodation, and quite happy. However, it has me very aware to what service providers offer and the rights of residents and rights of people with disabilites. I advocate for my son and find by doing this am advocating for all people who use services. DHS (Department of Human Services) here in Australia, sometime call me in to sit on committees and panels advocating on behalf of people like my son.
So we live in country Victoria in Australia. Our son lives in a home 40 miles from us, where most services are centered, we see him often and he comes home each holiday.
I enjoyed reading Pauls story on the MWParent support site and can so relate to some of the things his dad said. Especially with professionals - doctors (just who has the disability here?) Yes, we too were told to take our child home and do the best we could and care for him - My God! such compassion and help!
I don't think I was angry having a disabled child but more that there was no-one there to support us and I think that is more emotionaly and the lack of understanding, offering sympathy more than help and professionals offering things that just didn't come to pass - why? - because they didn't know what to do either!
Like Pauls dad said, there are no better people who can tell you about the child problems than the parents and family!!
Look forward to some communication from you all - Please feel free to email me if you like.